Tag: autism and education

Our amazing daughter

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December 12, 2024
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November 4, 2024
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October 7, 2024
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October 7, 2024

Autism is a diagnosis that can be emotional for parents and families to accept. In our case, the diagnosis needed to be accepted by our family. Our daughter is amazing. She is incredibly bright, sweet, and an absolute joy to be around. As a parent, one of the most gut-wrenching things we experienced was being told time after time, “Your child has challenges, but no one knows why.” In May of 2013, we finally got our answer. Our beautiful girl has a rare genetic condition called Cohen Syndrome that causes intellectual, medical, and physical disabilities. Receiving this diagnosis was bittersweet because we finally got an answer, but we still didn’t know how to help our daughter. With a rare genetic condition like this, there are several programs, specialists, and therapies available that we didn’t even know existed. There are people with resources who wanted to help but had never heard of our child’s condition. It was very alarming for us because even though we were thankful for their help, the process can be anxiety-inducing.

When our daughter was diagnosed with Autism a year ago, it wasn’t a bittersweet moment like when we received her original diagnosis of Cohen Syndrome. It was just sweet! Autism Awareness has been raised, and there are people in the education and medical field who have experience with Autism. I fully accept that our daughter has Autism, but the fact is that a lot of her challenges stem from her primary diagnosis that is rare. I asked myself how this “known” diagnosis could help when you have to take her “unknown” diagnosis into account? The answer was ABA therapy.

Although we have seen AMAZING progress through ABA therapy in our daughter over the last year, the truth is that it cannot be contributed fully to “just” ABA therapy. ABA therapy with the right team is the answer. What makes the right team? Compassion, humility, resource-connected, knowledgeable, and experienced team members. ABA is an evidence-based practice.

We know firsthand that having a team that is compassionate and humble will allow for success. Having a child with complex healthcare needs is overwhelming. We almost always feel like we aren’t doing enough (are we acting more like advocates instead of just being mom and dad? Is our child receiving the right therapies, too many or not enough? How can we balance comfortability for a child whose world is almost always uncomfortable, but also push her to reach her full potential?). Adding ABA therapy to our already crammed schedule brought apprehension. But having the right team, takes the stress out of the equation. We (parents, child and staff) work together on proper goals and time management.

ABA is an excellent tool that I highly recommend families consider, but it’s not the only tool. Especially when working with a child who has a rare genetic condition plus an Autism diagnosis. Other resources and tools may assist families in achieving their goals. For us this meant learning about the objectives as a family together while our daughter was mastering goals. ABA works best when it’s combined with your other resources; (i.e., current therapies in place, IEP teams, community support, etc.) as this helps generalize what is learned. We have seen our daughter transfer the skills she’s learned in her sessions into her everyday life. Our daughter, recently turned eight years old, received a skilled companion dog, and is transitioning to a general education classroom. This transition and the skills that her amazing ABA team teach her have been a blessing to her, and our family. Our daughter has been showing more affection to those she cares about. She’s able to master her goals outside of her sessions and into the community (which I am unable to express how HUGE this is). She is also able to complete her homework with modifications; additionally, she can share who she is with others instead of allowing her diagnoses to define her as others think it does.

From a logical perspective, ABA therapy is remarkable in how it allows children (no matter what the diagnosis is) to learn things that other children may more readily know. From a mom’s perspective, it’s beyond amazing. This process has provided my husband and me with the support needed so we can be her parents, instead of her providers. Partnering in this way gives us opportunities we wouldn’t be able to have without this kind of assistance. There’s a saying that it takes a village to raise a child. In the early days of our daughter’s life, my husband and I would jokingly say it takes a hospital to raise our child. As her health has become more stable, and we’ve been able to focus more on her education and life skills, we agree that in fact, it takes a village to raise a child — a properly equipped village. And we are so grateful that God blessed us with her ABA team as an addition to our village.

– by Nicole

How Long Will My Child Be in ABA?

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There is no simple answer to this question. Many factors impact the decision regarding the duration of an ABA (Applied Behavior Analysis) program for a child/adolescent with autism.

Whether services are provided in a home, clinic, or school-based setting there should be a detailed plan in place to guide the family through the intervention process and resources available for when services end. The following information is provided to help parents develop appropriate expectations regarding the duration of an ABA program for a child with autism.

Although there is no cure for autism, there is an abundance of research indicating that intervention programs based on the principles of ABA can have an incredible impact on a child. The ultimate goal of any intervention program is to increase adaptive behaviors and to decrease challenging behaviors to the point the individual with autism is able to function independently in daily life. The length of time a child participates in an ABA program will depend on the type of program implemented, the child’s progress toward identified goals, and the family’s ability to use the principles of ABA in everyday life.

The Program

Intervention programs may be implemented in a variety of settings. Home-based services are often delivered as part of a comprehensive or focused program. Your BCBA (Board Certified Behavior Analyst) may make use of The Behavior Analyst Certification Board (BACB®) Practice Guidelines for Healthcare Funders and Managers to inform decisions about intervention models appropriate for your family. The guidelines state that comprehensive programs address skill deficits and behavioral excesses across many domains and focused programs target a “limited number of key functional skills”. Focused programs often occur over a shorter period of time relative to comprehensive programs.

Progress

Children vary in the time it takes to acquire new skills. Further, complex skill acquisition targets such as maintaining a conversation will often require more time to demonstrate mastery than a target such as color identification. Clinicians should closely monitor a child’s progress toward a goal to ensure learning is occurring. Clinicians should closely monitor a child’s progress toward a goal to ensure learning is occurring If the child demonstrates difficulty acquiring a targeted skill, the clinician must make adjustments to the program in order to meet the needs of the child.

There are a number of ways to monitor a child’s progress. Line graphs provide important and detailed information about a child’s learning. Criterion-referenced assessments such as The Verbal Behavior Milestones Assessment and Placement Program (VB-MAPP) and norm-referenced measures such as the Vineland Adaptive Behavior Scales, Third Edition also provide valuable information. Once the child meets the mastery criteria of all goals identified in the treatment plan, the clinician may recommend a decrease in the number of one-to-one service hours.

Parents and Caregivers

An effective ABA program includes parents and caregivers implementing applied behavior analytic strategies during everyday life. The generalization of skills occurs when the child is able to demonstrate newly developed skills in a variety of environments with different people. Generalization is critical to an effective ABA program. If parents are able to teach their child new skills and generalize those skills to new settings, they are equipped with tools to address future challenges once the ABA program ends.

Putting It All Together

The long-term outcome for every family with a child with autism is different. Some individuals with autism remain at home with family members well into their adult years. Some individuals with autism live independently and pursue a career. Some individuals with autism live with some assistance provided by vocational trainers, social workers, and/or financial planners.

Many families begin their journey with autism by having their child participate in a one-to-one ABA program. One-to-one services are ended when program goals are met and parents are equipped with strategies to support their child’s learning and generalization of skills. However, parents often make use of consultation with a BCBA to assist with problem-solving specific behavioral issues. In reality, ABA is not something that has an end date. The skills that parents develop from the hard work of implementing an ABA program evolve and are used for a lifetime. Just as parents make use of strategies to promote good physical health (e.g., healthy eating and exercise), they also make use of effective teaching and problem solving learned from their ABA program.

 

– Hanna Rue, PhD, BCBA-D & Shana Huizenga, LMHC, BCBA, LBA

10 Tips for Navigating the IEPs

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The Outcome of your IEP process relies on you…

One of the most important discussions parents can have with their clinical team is about the goals they have for their child as they grow into adulthood. Most parents grapple with finding the time to think about their child’s long-term future when they are facing the daily needs of mealtimes, sleep schedules, or having a successful play-date. However, as tough as this discussion is, it is critically important to start this conversation early because the foundational skills that will enable your child to function well as an adult are taught and acquired during childhood.

A significant part of a child’s development will be determined by their school environment, academic placement, and the academic curriculum that guides their learning. A child’s initial Individual Education Plan (IEP) is critical. This important document will lay the groundwork for the types and level of services that a child will receive throughout their academic years. It is essential that parents put sufficient time and effort into preparing for their first and subsequent IEP meetings.

An Individual Education Plan (IEP) is a legal document that is developed for every child eligible for special education. This plan contains a statement of a child’s present level of functioning in terms of performance, educational needs, goals, levels of service, and measurable outcomes. The first IEP meeting is typically held before a child transitions into preschool or as soon as a child is identified as having a special need and determined eligible for special education services. An IEP meeting can be held at multiple times during the year: after a formal assessment; if a child demonstrates a lack of progress; or if a parent or teacher requests a meeting to develop, review, or revise a child’s current IEP.

There are some important steps that parents should consider when beginning the IEP process. We have outlined some of the most important ones for you here. The following guidelines can help you prepare for your first IEP:

  1. Understand the IEP Process and Know Your Rights. It is of paramount importance to read up on the IEP process, become familiar with IDEA (Individuals with Disabilities Education Act), and understand your rights as a parent. In addition to studying the law, many parents seek advice from an advocate and network with well-informed parents who have first-hand experience with the IEP process in their school district.
  2. Make All of Your Requests in Writing. All requests should be made in writing to create a documentation trail that provides a history of the child’s academic needs and requests to the school district (e.g., requests for an IEP meeting, an assessment of any kind, or a classroom placement recommendation). It also allows you to state your requests in your own words. In addition, ask the IEP committee to record these written requests as part of the minutes in an IEP meeting. The IEP committee can accept or deny these requests. If the committee denies the requests, then they must follow the procedural safeguards in IDEA and provide written notice of why they are denying your request. If the request is not documented in writing, the school district is not required to provide the service. (Be Familiar with Prior Notice of the Procedural Safeguards (34 CFR 300.503))
  3. Obtain Independent Assessments Ahead of Your IEP Meeting. The school team should not be recommending nor denying services without an assessment to evaluate the need for that service and neither should parents. You will want to request, in writing, that your child be assessed before the IEP meeting is held. Ideally, if all the necessary assessments are conducted prior to the IEP meeting, then the recommendations for treatments can be discussed during the IEP meeting. Be sure to request copies of the assessments, progress reports, and proposed goals in advance of the meeting, in order to have ample time to review and be fully informed during the meeting.
  4. Organize All of Your Records. Parents should have all of their records on hand and easily accessible during IEP meetings. Create a system of storing and updating all information that makes sense to you and that makes it easy for you to find the information you need.
  5. Observe the Classroom. Ask to observe any classroom where your child is being recommended for placement, so you can better understand if it would be a good fit. If for some reason the school will not let you observe, have a professional who is familiar with your child observe the setting.The law states that the team must start with the Least Restrictive Environment (LRE) which is the general education classroom as the first option and work towards a more restrictive environment only as necessary as needs come up that cannot be met with supports and modifications in the LRE. Therefore, placement should never be decided upon before the child’s goals and objectives are concluded. (see item #7 for Goals and Objectives)
  6. Formulate a list of Questions before your IEP. In advance of the meeting, prepare a comprehensive list of questions (a very long list is completely appropriate). During the meeting, assign someone on your team to take notes and write down answers to all of your questions. This allows you to focus on the conversation. A tremendous amount of information is exchanged at IEP meetings, and it can be overwhelming to absorb it all.
  7. Make Sure Goals and Objectives are Progress Oriented. Goals and objectives are one of the most important elements of an IEP. If the goals and objective are not written in a manner that is observable and measurable, one cannot determine if a child is making progress. Without this, the school can claim that a child has made progress without producing actual data to evidence the skills gained. In addition, the goals and objectives will specify what a child needs to learn in that academic year. This is the critical time to think more long-term. Will these goals serve where you want your child to be two years from now? Five years from now? Are they laying the foundation for the necessary skills that your child will need as an adult to live the most independent life he or she can? Get input from members of the team that work with your child before the meeting; ask for their opinion of your child’s progress and needs.
  8. Be the Host, Not the Guest. Since IEP meetings are held at the school district, parents typically feel like a guest at their child’s IEP. However, since the IEP meeting is about your child, parents can create a more personal atmosphere. For example: by providing snacks, pastries and light refreshments, you can put yourself in the position of host of the IEP meeting. Another idea is to bring a photograph of your child and place it in the center of the table to remind the team who and what the meeting is about- providing services to support this specific child in attaining his or her highest potential.
  9. Never Go Alone. The support of a family member, uncle, husband, friend, advocate, cannot be overstated. The IEP process can be  stressful, tiring, and sometimes overwhelming. Parents often share that having someone else in the room to support them, take notes and offer reassurance makes a huge difference. In some instances, parents obtain professional support from advocates or special education attorneys who specialize in the IEP process.
  10. Disagree Without Being Disagreeable. Once the team has made their recommendations and concluded the IEP, parents will be asked to sign the IEP document. The IEP document allows for them to sign that they were present at the IEP but that they do not agree at that time with the recommendations. This is a good option to exercise at the end of the meeting. It gives you the opportunity to take the IEP home to review later and have the option to request changes. This can be done in a very respectful way, allowing you time to make the best decisions that are best for your family.As a parent, you are a vital part of your child’s IEP team. You are your child’s best advocate and the person who knows what’s best and most appropriate for him. With the correct information and support you can create a comprehensive and suitable roadmap for your child’s future.

 

– Michelle Stone, M.S., BCBA. Based on an interview with David Wyles- a Parent’s Guide to the IEP.